Warwick University and NHS Participatory Research Project
The Inclusive Autism Research Participation Framework for recruiting culturally and ethnically diverse communities to research
This project is a collaboration between the University of Warwick and Coventry and Warwickshire NHS trust. We aimed to enhance the Participatory Research (PR) skills of academic researchers, community leads involved in Autism Research (e.g., NHS and charities) to recruit culturally and ethnically diverse Experts by Experience and participants to their projects. Even though PR aims to address underrepresentation in research, some communities within autism research are still underrepresented (e.g., culturally and ethnically diverse autistic people and/or their families, Maye et al., 2022).
We co-developed a framework to help researchers recruit cultural and ethnically diverse EbE groups in PR in autism and beyond by running four focus groups with autistic people and families of autistic people from the Black and South Asian (Sikh, Hindu and Muslim) communities. These groups are underrepresented in autism research.
For more details about this project, please contact Dr Jagjeet Jutley-Neilson: Jagjeet.Jutley-Neilson@warwick.ac.uk.
Review of literature: Why is it important to recruit culturally and ethnically diverse groups in autism research?
2) We conducted 4 focus groups with culturally and ethnically diverse experts by experience and participants (Black and South Asian [Muslim, Sikh and Hindu]).
We report the focus groups as two elements.
1) How do we talk about autism?
2) What makes it easier to participate in research?
We report the focus groups as two elements.
1) How do we talk about autism?
2) What makes it easier to participate in research?
What we created: The Inclusive Autism Research Participation Framework to recruit culturally and ethnically diverse participants.
The framework aims to enhance inclusive recruitment from culturally and ethnically diverse communities for research projects/initiatives. Community-focused recruitment is essential and involves collaboration with various community groups. It encourages researchers to thoughtfully engage with cultural contexts, demonstrate empathy, and practice reflective thinking.
